RHEUMATOID DISEASE AWARENESS DAY

I lift heavy weights.  I swing, I press and I snatch kettlebells.  I will be the first to do a Turkish Get Up.  I run.  I do high intensity workouts.  I've done triathlons.  I trained for and passed the Strong First Kettlebell Certification this past year.  This year I plan to train for and pass the Strong First Barbell Certification.  I have Rheumatoid Disease.  I am one of the lucky ones who have been able to control the disease with minimal medication and diet.  Why do I bring this up today?  Because not every one is as lucky as I am and because I MAY not always be so lucky. 

Today, February 2, 2016, marks the 4th annual Rheumatoid Disease (RD) Awareness Day.  Reason for a day of awareness?  Most people do not understand what RD is.  It is not simple a type  of arthritis.  Arthritis is just some symptom of RD.  What I have found interesting is that medical providers, outside of Rheumatologist and those who work with them, don't understand what Rheumatoid Disease is.  Dr. Lloyd, my first rheumy, would say to me that socially people including medical professionals would ask him how to treat their arthritis.  His response was always, "I need to know what type of arthritis you have."  Lupus, scleroderma and Sjorgen's Disease are forms of arthritis.       

Rheumatoid disease is a chronic systemic disease.    RD is a serious autoimmune disease that attacks the joints and other body parts.  Simple put, your body attacks itself.  It affects your lungs, your heart, your liver, your kidneys.  Surprisingly, which always takes me by surprise, sometimes you may feel a shortness of breath.  What I also always forget and continually surprises me is the level of fatigue you can feel.  Sometimes I wonder why I feel so tired and exhausted.  I forget this symptom.

 

I am lucky.  I have been able to control my RD with diet and, at times, medication.  I have not had to revert to the injectables to treat my symptoms but have been successful with Methotrexate.  It is not a great medication to have to take but it worked.  When I do take it, I need to go for blood work every 2 months.  One of the side effects is liver disease. 

There are many, many people who are not as fortunate as I have been.  Some sufferers try pills, some try injectables and others a combination of both.  Some people try everything without any relief.  Combine that with the fact that not enough research has been done on the long term effects of injectables.  If you have moderate to severe RD, life can be difficult, challenging and life threatening.  I do not feel I am overstating this.

This is true about rheumatoid disease as it is about many others.  Even during my worst days, most people did not know what I was experiencing even when I was using a cane.  I did not share the struggles then and I rarely do now. 

It can be a deadly disease.

For more information check out this site!


http://rheum4us.org/rheumatoid-awareness-day-2016-the-real-rheumatoid-disease/

Today was the first time....

Today was the first time in over 9 years that I have not been able to open the front door.  This simple door knob was impossible to turn.



Me v. The Door Knob

Today was "jeans" day at work.  No jeans for me.  It was skirt day.  You see, I couldn't button the jeans...not because they didn't fit because they did but because my hands aren't working.

I started this blog posting several weeks ago but have been able to complete it and I am not sure entirely sure why.  The reason may be that it is difficult to re-live my RA journey and I don't want it to be part of the present.

Three or four years prior to diagnosis in 2006, I controlled the symptoms with diet and exercise and I thought I was invincible but I wasn't.  Those symptoms came back with a vengeance.  And that door knob in the picture above, I couldn't open it for a very long time.  I couldn't open bottles or cans or my car door.  I couldn't carry laundry up and down the stairs.  It took me a very long time to just walk up the stairs to the second floor of my house.  If I tell you 15 minutes I would not be exaggerating.  I used a cane at times.  Dressing myself was a difficult and exhausting experience.  Getting out of bed in the morning was an ordeal.  The worst part of an auto immune disease is the exhaustion.  You could get a good night's sleep, 7-8 hours, and wake up exhausted.

After about 6 years of taking Methotrexate I decided to just stop and it was all good....for a very long time.  I do believe that healthy living can solve many of our ailments.  I went another 3 years without medication.  Now the symptoms have returned and the timing could not have been worse.  Last Saturday was the first session of certification training at Iron Body Studios.  I don't think I can begin to tell you how defeated I felt.  It took me at least 2 years to work up to committing to this certification.  Unfortunately, I made the decision to restart the medication.  That is how important this certification is to me.  I don't have the time to work through healthy solutions.

The medication had not entirely clicked in by last Saturday.  So I did what I could and it felt great.  I hadn't done much heavy lifting since the last signs of symptoms.  This week I started following the program.  That bell is swinging and the get up is getting up...

Now, you ask, why did I say last signs of symptoms?  Because I had the early signs for a while but I was oblivious to them.  It was not until I could not use my hands that I realized what was happening with me. 

That is how it goes...But in the end it will all work out.

Some facts about RA

Osteoarthritis is the most common form of arthritis. Rheumatoid arthritis affects about one-tenth as many people as osteoarthritis.  The main difference between osteoarthritis and rheumatoid arthritis is the cause behind the joint symptoms. Osteoarthritis is caused by mechanical wear and tear on joints. RA is an autoimmune disease in which the body's own immune system attacks the body's joints and its internal organs.

Osteoarthritis is the  most common arthritis.  On the other hand, rheumatoid arthitis is recognized as the most crippling or disabling.

And a great article on RA and fatigue.  Note: Although this talk was presented in a workshop on rheumatoid arthritis, its message applies to people with many types of systemic rheumatic disease, including lupus(SLE), fibromyalgia, scleroderma, and others.

http://www.hss.edu/conditions_mastering-impact-fatigue-ra.asp#.VTgxpMpFD4h

Should You Excercise When You Have Limitations?

First, I am not a doctor.  I am not recommending any form of exercise.  Before you start an exercise program please consult your doctor.  On that note...

I was diagnosed with Rheumatoid Arthritis about 7-10 years ago.  I don't remember the exact date.  After the diagnosis and after starting Methotrexate, I was able to continue an exercise.  I was always warned about doing low impact exercises and lifting moderate weights...okay light weights. 

I made the decision to continue running because I loved doing triathlons.  My doctor would chastise me at every visit because I continued to run.  He wanted me to exercise but he wanted me to lift light weights and always mentioned doing crunches.

When I started lifting heavy, I continued to feel better to the point where I discontinued my medication.  I have been Methotrexate-free for 3 years.  So far so good.  I am not saying the two are related or that lifting heavy objects is good for everyone with RA or with any autoimmune disease.  What I am saying is that you need to keep moving.  You need to keep your joints active.  I would also say under the supervision of an MD and a knowledgeable trainer, people should test themselves a little.  Everyday health provided some exercise trends that they feel are good for people with RA.  I would also say they could be good for anyone with an autoimmune disease. 

http://www.everydayhealth.com/pictures/hot-exercise-trends-and-rheumatoid-arthritis/?xid=nl_EverydayHealthLivingWithRheumatoidArthritis_20140810#01

When I was first diagnosed with RA, I was traumatized.  Not necessarily about the condition but what effect it would have on my running and general exercise routine.  I searched the internet for articles about those who had succeeded in maintaining and actually excelled as an athlete leaving me discouraged.  There were not many success stories out there.  That doesn't mean they didn't exist.  It meant that no one was talking. 

Here is the story of Britt Johnson, someone diagnosed with RA who is a runner or as described in the article...an athlete!

http://www.everydayhealth.com/news/the-hurt-blogger-how-i-became-a-runner-with-ra/?xid=nl_EverydayHealthLivingWithRheumatoidArthritis_20140810


You have to try, because you don’t know what’s possible.”—Britt Johnson  TWEET

Moving It. When and How.

First, I am not a doctor.  I am not recommending any form of exercise.  Before you start an exercise program please consult your doctor.  On that note...

I was diagnosed with Rheumatoid Arthritis about 7-10 years ago.  I don't remember the exact date.  After the diagnosis and after starting Methotrexate, I was able to continue an exercise.  I was always warned about doing low impact exercises and lifting moderate weights...okay light weights. 

I made the decision to continue running because I loved doing triathlons.  My doctor would chastise me at every visit because I continued to run.  He wanted me to exercise but he wanted me to lift light weights and always mentioned doing crunches.

When I started lifting heavy, I continued to feel better to the point where I discontinued my medication.  I have been Methotrexate-free for 3 years.  So far so good.  I am not saying the two are related or that lifting heavy objects is good for everyone with RA or with any autoimmune disease.  What I am saying is that you need to keep moving.  You need to keep your joints active.  I would also say under the supervision of an MD and a knowledgeable trainer, people should test themselves a little.  Everyday health provided some exercise trends that they feel are good for people with RA.  I would also say they could be good for anyone with an autoimmune disease. 

http://www.everydayhealth.com/pictures/hot-exercise-trends-and-rheumatoid-arthritis/?xid=nl_EverydayHealthLivingWithRheumatoidArthritis_20140810#01

When I was first diagnosed with RA, I was traumatized.  Not necessarily about the condition but
what effect it would have on my running and general exercise routine.  I searched the internet for articles about those who had succeeded in maintaining and actually excelled as an athlete leaving me discouraged.  There were not many success stories out there.  That doesn't mean they didn't exist.  It meant that no one was talking. 

Here is the story of Britt Johnson, someone diagnosed with RA who is a runner or as described in the article...an athlete!

http://www.everydayhealth.com/news/the-hurt-blogger-how-i-became-a-runner-with-ra/?xid=nl_EverydayHealthLivingWithRheumatoidArthritis_20140810



You have to try, because you don’t know what’s possible.”—Britt Johnson  TWEET